Unbeknownst to us, Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder – CPS Deficiency.

He was officially diagnosed at the age of 4 after I spend years trying to find out what is going on as my intution strongly suggest and knew that something wasn’t quite right.

And as I was slowly losing my mind, I thought I’d never find out what was happening day in and day out as we rode the rollect coaster of not sure how each day would go.

Between days of screaming non-stop to days of sleeping copious amount of hours and the vomiting that happened in between all of those times, I was losing my patience in more ways that one.

Be it by fate or happenstance, I relocated to Cenral Virginia in January and within 7 months we finally had a diagnosis.

And there is nothing more scary that learning you were batteling death every single day and by some chance managed to not give in to the grim reaper. However, after a year – spending 35 times in the hospital Lennon was recommended for a liver transplant in hopes to save him from this often fatal disorder.

In November 2008 he underwent not one but two liver transplants in order to save his life and is now facing another transplant.

January 20, 2011 he received his third liver and he continues to do what he does best: LIVE

This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon